The Role of Family Caregivers in Dementia Care: Telling Life Histories

In this presentation, I describe how family members of Japanese elderly persons with dementia participate in the caring process. In Japan, the person-centered care paradigm (Kitwood 1997) was adopted in the 2000s, and the government has declared establishing this model for dementia care as one of the most important national goals (Ministry of Health, Labour and Welfare, 2015). However, little attention has been paid to the role of family caregivers. In “a new century in dementia care” (Iguchi 2007), what roles have families adopted?

To answer this question, I analyzed data from participant observations and interviews in several care settings, including nursing homes and self-help groups for family members. Data contained over 500 field notes and 20 videos. I will focus on interactions among family caregivers, professional care workers, and elderly persons.

The role of family caregivers is described as “telling life histories.” Under the person-centered care paradigm, the key concept in providing care is “personhood” (Kitwood 1999). Caregivers must respect elderly persons’ personality, past, preferences, etc. when planning care strategies. Life histories of elderly persons have become an important standard in dementia care. However, under this paradigm, we often encounter a very characteristic problem: professionals do not know their clients' past, and elderly persons cannot narrate their life histories because of their dementia symptoms. In this difficult situation, caregivers play a crucial role: telling other care providers the life history of their family member with dementia. In dementia care, the information provided by family caregivers is treated as “privileged knowledge" (Gubrium & Holstein 1990) by other caregivers.

To conclude, I emphasize two points. First, regardless of the severity of dementia symptoms of an elderly person, his/her personhood is sustained through interactions among caregivers. Second, family caregivers assume a characteristic responsibility and burden under the person-centered care paradigm.